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Thursday, February 23, 2017

Tomorrow Might Be Worse- Love Today!

Having a chronic illness, or two, is like Weight Watchers for my energy system: everything I do costs energy points, and I only have a set number of points to spend each day. Every single action that my body takes, from the moment I wake until the moment I sleep, takes a certain amount of energy points. When I get to the end of the points, that's all there is. There's nothing left. And no amount of rest will replenish the energy points. Unlike the real Weight Watchers, I can't cheat and just spend a little bit more energy. The tank is depleted and that's it. Sometimes the tank of energy is empty by noon, sometimes I have enough to get through until 8:30pm. It all depends on what type of activities I spend my energy on during the day.

Things I never used to think about now drain me. Going grocery shopping costs me a lot of energy points. Because my kids have special needs, we spend a lot of time in doctors' and therapists' offices, and sitting costs a lot of points. When I sit still, the chronic pain that I have throbs and flares. I hate sitting still. It's excruciating. Making a phone call costs points. Having lunch with a friend costs a lot! I love being with friends, they make my heart sing. So although I refuse to give that up, I have to ration my points for the day accordingly. I know that after meeting a friend, I won't have enough energy for anything else that day. Listening to music with lyrics costs a lot of me energy points, because chronic illness has made my brain a thick, dull muscle that has forgotten how to flex. When I listen to music with lyrics, my brain tries to understand what the song is saying, which takes a huge amount of focus. When I'm driving, I can't listen to music with lyrics or I won't be able to focus on driving. And while we're on the subject of driving, that activity probably costs me the most points. There is so much going on when you drive a car, so many things you have to think about and pay attention to all at times. AND you have to SIT to drive, which we've already established is very difficult for me. Driving is the most exhausting activity that I do. If I drive a lot in one day, it takes me several days to recover.

When you have a chronic illness, in the back of your head you're calculating energy points constantly. If I have to take a kiddo to therapy, and sit in the waiting room and wait, I shouldn't plan to go grocery shopping that day. If I have a meeting with the school, cancel all other plans the day before and the day after, because stress sucks out all my energy points. If I have to have any conversations with other humans at any point during the day, deduct points. Being social is exhausting. I love it, but it's exhausting.

Not only do I have to figure out the logistics of life with four kids and two dogs, but I also have to always make sure I'm maintaining a positive balance of energy points. If I mess up, or don't plan well, or something unexpected happens, I may not have enough energy to snuggle with my little girl and read her books before she falls asleep. Or I may not be able to go to my yoga class, because even the fun things cost points. I don't have an endless supply of energy anymore. Which is hard for healthy people to wrap their heads around, I get that. People who are "health-challenged" have to count their energy points all day, every day, in order to get everything done that they need to.

Having a chronic illness feels like treading water. You never get to float, you're always working hard to survive life's demands. Some days it's easier than others to tread water while the seas are glassy and warm, but you're still working at it. On tough days, there is seaweed wrapped tightly around your ankles, pulling you down as you do your best to catch your breath in between the waves that roll over your head.

Always working. Never floating. Nothing is ever easy, nothing ever gets taken for granted. Which, if you think about it, is a pretty cool gift that chronic illness gives me. Chronic illness makes me appreciate everything. Chronic illness is unpredictable, and I never know if tomorrow will be worse than today, so during my "today's" I do everything I can to be happy and healthy and enjoy life. I don't know if this is the best day I'll have all week, so if I have energy to see a friend today, I'm going to grab that opportunity! If I have energy to get groceries AND walk the dogs, I'm doing it! And while I do it, I'll be rejoicing that although I feel like I'm dragging my body through quicksand- even on this good day- I'm outside in the fresh air, using my legs and enjoying my puppies. If I have the energy to write, today I will! Because I don't know what I'll feel like tomorrow. Tomorrow might be worse than today.

This is why being a friend with a chronic illness is difficult: you want to be able to commit to something and follow through, you want your friends to be able to count on you. But sometimes you have spent too many energy points dealing with life's everyday stress, and you don't have the capacity to pull yourself together and muster the strength for one more conversation. Being a parent with a chronic illness is the worst. Sometimes I'm so fatigued I find myself snapping at my kids when there's no reason. No reason other than I spent all my energy points before they got home from school, so now parenting seems completely daunting and impossible.

Often when someone has chronic illness, they look fine. My mom told me over the weekend that although she knows I don't feel it, I look vibrant, healthy, put together. What a nice thing to say! And what a tricky, sneaky thing for chronic illness to do to someone. I have a friend who has a chronic illness also, and we agree that we should come up with a spot system. On days when we feel only medium-horrible, we would wear purple spots on our skin. On super bad days, the spots would be green, etc. That way, how we look would resemble how we actually feel. Then the world might be more understanding if I say, "You know, I just can't go out for lunch this week, because I spent all my energy points dealing with my kid's school about his IEP, and my spots are FUSCHIA today!"

People with chronic illness get it. If my friend with chronic illness knows I've been out of town for the weekend, she also understands we won't be meeting at the pancake restaurant this week. Instead, she texts (Notice, she doesn't call, because that's too exhausting for both of us!) to see how I am and if I am recuperating from the trip.

Each person has their own energy point system, and their own spot system. Unfortunately, these systems are invisible to the naked eye, so it is vital that we never, ever, ever judge other people. You never know what someone else is dealing with. Sometimes the energy points are all used up, and your friend with chronic illness will disappoint you. Sometimes your friend with chronic illness has puce-colored spots and just can't keep your plans. Sometimes your Mama with chronic illness had to take you to a very long, very far away, doctor's appointment for your special eyes, and so Mama is running on fumes and doesn't have the normal patience she usually has.

Just know that although this chronic illness demands a lot- a lot of care, attention, calculating, energy- I won't let it take over my life. I will save up my energy points to have pancakes with you. I will ration my energy to read you bedtime books and snuggle with you. I will wait for rainbow-colored-spot days to do laundry AND clean the bathrooms. Chronic illness demands a lot, but you learn to manage it the best you can. Sometimes it's unpredictable and surprising and difficult. But it's important to maintain an attitude of gratitude in order to find the small gifts even on the fuschia-spot days.

Tuesday, February 14, 2017

My Valentine

We used to do everything together. We were inseparable, my Valentine and me. For the years before kids, we would go to the grocery store together. Take walks together. Go to movies and out to dinner together. Visit coffee shops and book stores together. ‘Together’ was our favorite way to be.

In the years since expanding our beautiful, chaotic family, we barely see each other. With the demands of hectic work and family schedules, we struggle to carve time out to enjoy each other. Life happens. Life is busy and messy. But when given the opportunity, ‘together’ is still our favorite way to be, and my Valentine is my favorite person in the world. I think that is something to be celebrated.

Twenty-seven years ago, my family moved into the house next door to Alex’s. He is a couple years older than me, so our paths didn’t cross very often in high school. My bedroom faced Alex’s, and every so often I would hear his (very) loud music and think huh, that’s funny. I like that band too! I listen to that music too! Once when I got up the nerve to actually talk to him, he pretty quickly shut me down and we went back to The Ignoring Phase.
 After I graduated from high school, I spent the summer working at Blockbuster Video. Alex worked there also. Once in a while we would chat. I noticed Alex brought books to work that he was reading, and they were books I liked. I kept seeing how many similarities we had, and he kind of crept into my heart. He was funny and kind. He was interesting. I could see he was good. Just a good person. And he had cute curly hair and amazing blue eyes.

I finally got Alex to take me to a movie- “Four Weddings and a Funeral.” Since we lived next door to each other, I walked across the yard to let Alex drive us to our movie in his tiny blue car. He drove like a maniac (that hasn’t changed), and kept a quarter in his mouth for the toll (which was gross but oddly endearing), but somehow I fell in love with him anyway.

I was house sitting for family friends, so Alex and I stayed up all night after the movie, just talking. We just clicked. It was the most amazing feeling I’d ever felt. We talked and laughed. All night. I almost killed him because I didn’t know he was allergic to hazelnuts and made him try Nutella and he had an allergic reaction. Ah, young love. I went home the next day and told my Dad that talking to Alex was like talking to my best friend from childhood. He says now that he thought, “Uh oh. Here we go.”

We spent the next four years living in different states, going to school and trying to be together as much as possible. It was torture, being apart. Somehow our relationship survived, and we made some pretty cool memories along the way. And the rest is history…
What’s so interesting is that I still like Alex. After having pretty torturous roommate experiences in college, I was convinced I was doomed to not like anyone that I would ever live with. Alex and I have spent the last 23 years being together as much as possible. And I still like him. Liking someone is different than loving them. You can love someone and truly hate being around him. So of course I love Alex, but it’s a gift to still like the person you love, after all that life has thrown at us over the past two decades.

While entrenched in the chaos of trying to help our twin micro-preemies survive, I read a statistic that said most marriages with multiples end in divorce, and if those multiples are preemies, you’d better just start packing your bags now. Because no marriage can survive that.

HA! Take THAT, stupid statistic! The only constant in my life, is my Valentine. Through absolutely every horror and struggle we’ve dealt with over the past 23 years, Alex is strength, love, steadfast perseverance. We have experienced things that most couples don’t ever even have to fathom. Four preemies, surgeries, illnesses, moves, job transitions, four kiddos with special needs…and through it all, he keeps stepping up. Every time I say I have a new thing we need to try for the kids because it may help them, no matter how quacky it sounds, Alex listens to me. He gives me a chance to explain to him why this new (sometimes crazy) idea could be one to improve our kiddos’ lives. He always supports me, even if he thinks I’ve gone bananas. He is reasonable and fair, and always wants to see his kids succeed, thrive, and grow.

There have been dark, low, horrible times, don’t get me wrong. Our life together is by no means perfect. There have been times (more times than two people should have to experience) when we have looked at each other over a NICU isolette with terror and raw panic in our eyes, afraid of losing our precious new baby. There has been unknown—where will we live, where will Alex work, can we make it on one salary, how will we take care of twins, how will we help our kids with their unique needs, how can we be advocates for FOUR kids, how will we maintain our relationship during all these years of sleep deprivation and total chaos…there are intense and powerful worries that we wake up to every single day. There are times when we are screaming and crying because we don’t know how we will survive the anger that spews from our children during their rages. There is disappointment and exhaustion when we put our kids’ special needs ahead of our own, again and again and again. There is stress about how to logistically get all the kids everything they need to be healthy and happy, when there are just two of us and so many needy little ones. There is the frustration and desperation when we see our children floundering at school with no effective help in sight. There is financial worry; we worry about how to take care of everything everyone needs on one salary. There are health scares. Trips to the ER. Illnesses. Late night fevers. Owies to kiss and bandaid. Cars and dishwashers that break, bills that have to be paid. An endless monotony of annoying life distractions.

Love isn't always magical and pretty. Sometimes love gets buried under the mountain of dirty, messy, gritty, sucky life stuff. But true love is always there, steady and sure, waiting to be dusted off to come back into the light. True love is helping your wife take a shower after her third C-section, because her organs started shutting down and she's in so much pain she can't breathe. True love is instinctively catching your son's vomit in your open hand while he hurls it out of his body at the speed of light. True love is sitting with your wife while she is wrenched with worry about the latest struggle a kid is having. True love is changing poopy diapers and being covered in spit up and not having slept more than 3 hours in two days. True love is taking your toddler twins on an outing so your wife can have a moment to rest. True love is letting your little girl paint your toenails fluorescent pink. True love is popping your teens' zits and squishing a Q-tip in 8 little ears because they love the sound of having their ears "cleaned." True love is searching for (and finding!) a job in the area because your kids are barely hanging on in the environment they know, and to move them would mean major setbacks. True love is making your wife a gourmet dinner after a hard day at work. True love shines through the mess of life, like a bud escaping the soil in spring. 

Despite the mess of our chaos, once in a while, we find each other again. We catch each other’s eye and, after all this time, can read each other’s thoughts. I know when Alex’s look says, “Can you believe this kid??” or “Help, I’m about to lose my mind!” or “Did you shower today?” Once in while we find time to be together, just us. And we are always amazed at how much we like being together. Even after all the chaos of the past twenty-three years. Even after all the worry that weighs us down every day. Even after the list of special needs and endless brainstorming about how to help our kids. Even after all the never-ending, soul-crushing, tear-producing stress of this life. Even after all that, Alex is my Valentine.
You know what makes our marriage great? Respect. Love. Kindness. Hot chocolate doesn’t hurt, either. A couple weeks ago, I had had a very bad horrible terrible morning because of the stress of getting the kids out the door for school. I also was feeling like total crap physically. Alex had to leave early for a doctor’s appointment. I was sitting in my sewing room, working on a weighted blanket, when Alex came home to get ready for work. In his hand, he had a cup of Panera hot chocolate for me. He knows this is one of my favorite treats of all time. He thought about me, and went out of his way to do something sweet and unexpected for me. This is who I knew he was, twenty-three years ago. This is who he still is. This is why he is my Valentine.

The way Alex loves his kids is also why he is my Valentine. The way he can go from slogging through math homework with one kid who has a learning disability to looking for a Barbie shoe for another, to laughing over YouTube videos with one more, to taking yet another one to therapy…this man. He just keeps showing up, you know? I’m sorry to say it, but I hear about a lot of Daddies who just refuse to show up. They can’t or won’t be there for what their family needs. Not my Valentine. It’s hard, it’s stressful, it’s exhausting, much of the time life really stinks, but my Valentine keeps showing up for us, day in, day out. Even when he can’t take another millisecond of the chaos that is our life, he regroups, he rethinks, he figures out how to be here for all of us. Emotionally and physically. When I break, he is strong. When he falters, I’m here for him to lean on.

Recently one of the kids’ therapists said to me that most families would have been torn apart by the level of stress our family has. By the rage some of our kids display, by the turmoil and strain our family has to deal with on a daily basis. By the PTSD we surely all suffer from because of our bag of special needs. She said the fact that our family is still together, and so loving toward each other, is a huge testament to who we are.

Sometimes I don’t know how we’re still together—all the odds are stacked high against us. But then I remember who I am, and who Alex is, and then I know why “we” work. Because we respect each other, even in the toughest moments. Because we try to be kind. Because we forgive. Because we are committed to each other. Because we remember the little things that make the other person happy- like hot chocolate after a terrible morning. Because when all is said and done, when we are blessed enough to find a precious few moments of less stress, we like each other more than any other humans on Earth. And because we like each other, we strive to love each other more every day. My Valentine is my rock, my heart, my joy.

Here’s to my Valentine. I thought I loved you when I married you, but the last 23 years have given me endless chances to see how much more amazing you are than I thought all those years ago, and to see what true love looks like up close. If you can come through all that we have, and still genuinely like and love each other, that’s something that should be celebrated.

Happy Valentine’s Day, my Valentine.


Friday, January 20, 2017

Chronic Illness

The journey of chronic illness is a lot like the long, lonely drives I’ve taken lately on my way to find answers to my health questions. The drive, and my spirit, were windy, rainy, gray. Alone in my van, and alone in my struggle for health. Sometimes finding healing is a very long journey.
For more than a decade, I’ve been trying to figure out what’s wrong with me, and I’ve been doing it on my own because despite having seen SIXTEEN doctors in thirteen years, no one could figure out what is wrong with my body. Much as the wind on these drives tried to shimmy my van into another lane, there have been many forces during the past years that have attempted to steer me the wrong way. Distractions. Doctors who had wrong information. People who think I can’t possibly be as sick as I say I feel, because I look fine. People who think I should give up the quest to find my health, because if all those doctors say I’m healthy, I must be. People who say I should be happy with what I’ve got and how I feel.
As I drove to these appointments over the past month, my windshield wipers were on high, frantically swiped the rain and sleet from my vision so that I could try to make sense of where I was going. And honestly, I knew the direction I needed to head -both on these rainy real-life journeys and in my metaphoric journey- but I didn’t know exactly where my road would take me, or which exit to get off on. All I knew was that I needed to be in this van, driving down this road, and stopping at a rest area wasn’t an option. Getting distracted or calling off the journey were not options. I’ve been fighting for my health, my happiness, my life. I’ve had to make many detours, but now, after these last two long drives, I think I’ve found the right destination.
I’ve been getting more and more sick over the past decade. It’s been subtle. So subtle that I’ve forgotten what it feels like to be healthy. Chronic illness has become my new normal. Looking back, I can see when my health took a definite turn for the worse all those years ago. But doctor after doctor couldn’t explain my symptoms, and most of them brushed off my concerns as just being too stressed out because I have four kids with special needs. I’ve had a couple of rounds of physical therapy to address inflammation that no one could really understand. I’ve had a couple of cancer scares. I’ve had a bone marrow biopsy. I’ve spit into countless test tubes. I’ve had so much blood drawn, I could have probably given transfusions to an army. I’ve accumulated some crazy diagnoses. I’ve had treatments for some of those crazy diagnoses. But I still feel horrible and no one could explain why. My (PREVIOUS) frustrated general practitioner kept prescribing medications to mask the symptoms I complained of, year after year. She touted the benefits of sleep, stress reduction, drinking enough water. Duh. I know all that, and although it’s been impossible at times to take care of myself the way I should because of my life with my beautiful children, I knew there was something else lying underneath - something that was the real cause of my illness.
So, being the ever-curious crazy person that I am, I just kept digging. And digging. And digging. I can’t even begin to tell you the things I’ve looked into and researched and pursued over the years. I felt that if I could figure out what was happening to my body, I would have a hint as to what is happening to my children’s bodies to make them suffer so much with tics, anxiety, insomnia, brain fog, neurological disabilities. I attacked this journey with the tenacity and ferocity that only a mama can when she’s desperately trying to improve her life, as well as save her children from following in the same path of chronic illness. I refuse to let my children spend decades of their lives feeling like crap with no explanation why. If I can do anything to help them solve the mystery of their underlying health issues, it’s my duty to pursue that.
Chronic illness certainly is a lonely journey. Especially when you look fine. People get tired of hearing about your ailments. I get tired of FEELING my ailments. Some people wonder if you really have all the symptoms you say you have, or if you’re just looking for attention. After all, how could someone who looks perfectly healthy really have ALL those things wrong with her? I just have to say, never in a million years would I wish chronic illness on even my worst enemy. (Of which I have none. Unless someone out there secretly loathes me. If you do hate me, keep it a secret, because I can’t take any more negative crap right now.) Sadly, my entire family struggles with invisible disabilities. It’s tough when you look fine but feel terrible, or your brain isn’t working right or your body is betraying you. It’s tough. One thing this journey has taught me is to never, ever, in a zillion years, ever judge someone when you can’t possibly have all the pertinent information. You never know what they’re dealing with.
One of my recent long, rainy treks was to visit a doctor who uses the most reputable lab (IGeneX) to test for Lyme disease. After being diagnosed with Chronic Inflammatory Response Syndrome (mold toxicity) two years ago, I’ve done all the treatment for that that I could. And although there have been some improvements in my overall health, it’s not good enough. There’s still something wrong with me. I still have symptoms that fill an entire page. This isn’t good enough. So I kept looking for answers. Maybe I’m just bull-headed, but maybe I’m actually a fantastic advocate. Who knows.
I found a doctor who does the Lyme testing and will interpret the results for you. I took the long, lonely, rainy trek to her office before the holidays. She met with me and kept telling me, “You’re not crazy.” As she was leaving the office, she turned to me and said, “Most people in your position would have given up looking for answers.” I responded, “I’m just not one of those people.”
When the doctor called with my test results, she said I should see a Lyme Literate MD. After the holidays, I took those test results on yet another long drive to a clinic in Wisconsin that treats Lyme, among other things. The nurse practitioner met with me for an hour and a half. She said I have Chronic Lyme. (Which I already knew because of all the research I’ve done. They should give out honorary doctor degrees if you do this much research.) She started me on the Lyme protocol, which involves rotating antibiotics and herbal treatments. It’s going to be a very long journey, but at least now I’m actually getting somewhere! I’m so tired of doctors telling me I have inflammation throughout my entire body, but they don’t know why and all their tests come back normal. So they say I must be crazy or I must need more sleep. Or I need to drink more water. Or take these meds that have a million side effects. Awesome.
Treating chronic Lyme takes a lot of patience, time, and knowledge. When you have an illness like Lyme, the buggies die off in stages. When you have a die off (aka Herxheimer reaction, or Herx), you feel even more horrible than you already do. After you detox from that die off, in theory you’ll feel better, incrementally. Not so fun. Tick illnesses are very smart, and they hide in all different parts of your body, hoping to keep feasting on you and draining your health. Normal bugs-- you can take an antibiotic, it finds and kills the bugs, and you’re done. Lyme bugs move, change, get smart about how you’re attacking them. That’s why you sometimes need to change the antibiotics and herbal treatments to effectively attack the bugs in different ways.
Another issue I have are genetic defects, or snps (pronounced ‘snips’). These defects make it impossible for my body to tolerate things that “normal” people can. For instance, I have the MTHFR defect that makes it impossible for my body to use folic acid in the way it is put into most vitamins. When you have this defect, you usually have a lot of reproductive trouble. (Four preemies, hello??) A simple saliva test can tell you if you have this defect. If you do, you take a different form of folic acid in a different vitamin, and problem solved. Every woman who wants to have children should have this test. What if simply taking a different vitamin could have saved my babies from being premature? My heart breaks every time I think about this. If only I had figured all this out 14 years ago…
I also have the CBS snp. When you have this genetic defect, your body can’t detox ammonia. Things that contain sulfur give off ammonia when you ingest them. Sulfuric foods include eggs, protein, broccoli. I can’t take Epsom salt baths, which are a very common method for detox. I can’t use some of the common detox supplements like Chlorella, because they contain sulfur. If I don’t limit my sulfur intake, my brain sits in a toxic ammonia stew, because my body can’t get rid of the poison on its own.
There are many factors that go into healing. When you have a couple big, chronic diagnoses, like Lyme, mold toxicity, Hashimoto’s Thyroiditis…PLUS genetic snps, well, you’re pretty much screwed. Up until I found out my genetics, I was taking Chlorella and doing Epsom salt baths three times a week, per doctor’s orders. I would feel so horrible after a bath, I would have to cling to the walls, because the world was tilting maniacally, and find my way into bed where I would collapse and wait for sleep to swallow me so I didn’t have to feel the world anymore. It was terrible. Now I know that those baths were poisoning me. Just because Epsom salt baths are good for most people doesn’t mean they’re the right way for me to detox. I can’t stress this enough: you have to know all the factors that are making you stay ill. You MUST learn your genetic makeup, the status of your hormones, your thyroid and adrenal glands, if your liver is working well, whether you have to eat gluten free, whether you have vitamin and mineral deficiencies, if you have allergies, if you have yeast overgrowth, or cortisol issues, whether your neurotransmitters are functioning correctly, if you have leaky gut, or Epstein Barr, whether you have other bacterial or viral or parasitic infections. These things are not hard to find out. Especially if you find a doctor who knows how to look at all these different pieces of the overall health picture. These are not things typical doctors look at, so if you have an atypical illness, seeing a typical doctor is like spinning your wheels in a mud puddle. You’ll get nowhere.
This list is overwhelming, especially if you have to figure it out COMPLETELY on your own, like I have had to do. You do start to feel like you’re insane. Sometimes I would question why I wasn’t feeling better after following my old doctor’s orders of more sleep, exercise, even Epsom salt baths. Years ago, I assumed doctors knew more than me and would be able to fix any problem I have. (Picture me laughing hysterically at my na├»ve stupidity) Now I know that not all doctors are created equal. I’m sure they do all try the best they can. But sometimes that’s truly not good enough. What enrages me is all the time I’ve wasted with all those doctors. If they didn’t know what was wrong with me, that’s totally fine, but they could have said, “What you feel is not normal. I will help you find a doctor who can help you.” If just one of those dozens of doctors I’ve seen had said they would help me figure this out, instead of sending me off with yet another prescription for a drug that would prove to further screw me up, that could have been a game changer.
Here’s the bottom line: you have to always, always, always be your own best, most diligent and tireless advocate. If you feel like a piece of your health is missing, you might have to search for it all on your own, sometimes for decades. If you know your kiddos are suffering with invisible disabilities, you have to stand up for them. You have to be absolutely ferocious and relentless in order to get them the things in life they deserve. You can’t assume that a single other person in this world will fix something for you. You have to be determined to do it yourself, if that’s what is necessary. If your kiddo has invisible disabilities, no one will say, “You know what? Your kid looks like he needs a different way of learning at school. Let’s hook you up with that.” If you have an endless list of mysterious symptoms, in my experience, no one will say, “I will help you figure this out. It’s too overwhelming to do on your own, so I will help you.” You have to know that sometimes, you will walk this journey alone. You have to just keep going. You have to ask questions of anyone and everyone who you think could help you gain insight. You have to read, learn, seek, think. And you also have to hold that hope out in front of you -always- that you will figure it out, find answers, and make things better. You will absolutely piss people off along the way. People will think you’re crazy and over-reactive and annoying. Who cares? Honestly, when your life or the lives of your children are on the line, who cares what other people think about you? At the end of my life, I will arrive at the Pearly Gates with the knowledge that no matter what else I messed up during my time on Earth, at least I never gave up trying to find a better life for my family.
I do have to say, once in a while, you find an angel in your path. You find a friend, loved one, or maybe even a doctor, who gives you a gift. A gift like understanding. Of reassuring you that you are not crazy. Instead, you’re brave. To those angels in my life- my dear friends and family- there are no words to express my gratitude for you. Sometimes I’m given the gift of compassion and love at the perfect moment, when I feel despair and darkness. My angel loved ones lift me back up and hold my hand and lend me their strength to keep on trekkin’.
If you have as many crazy things going on in your body as I do, it’s still not impossible to heal. You just have to be creative. For instance, because of my CBS snp, I have to limit my protein intake. Every day, I take a supplement called Yucca that helps break down ammonia in my body after I eat protein. I didn’t know about this until I researched my CBS snp. My new Lyme doctor verified that I should be taking this supplement so my brain doesn’t sit in a toxic stew of sulfur bi-product. I also drink lemon water as a way of detoxing. And instead of Epsom salts, I put lavender essential oil in my bath to relax and rejuvenate my body and soul. I can also use an infrared sauna to help get toxins out of my body. See? There are still ways to heal, even if you have a daunting list of crap that’s wrong with you. Nothing is impossible. Nothing is hopeless.
Here’s a crazy, spooky thing that makes me giggle: my family always jokes that I should just give in and become a vegetarian, because I have never liked meat. In fact, I have serious vomit issues with meat. It just grosses me out. I feel like poop after I eat it, I hate the taste of it, I hate the thought of eating a living, breathing being. The whole thing makes me want to puke. Now I know that I shouldn’t eat much protein, because it’s not good for my body! My body knew this already and has been trying to tell me! Through this journey, I’ve come to realize that if you listen very closely to the whispers of your soul, you’ll have all the information you need to be happy and healthy.
Every soul on this planet deserves to be healthy and happy. My kids deserve to have support at school so they can succeed. I deserve to know what’s really wrong with me so I know how to heal. The list of my diagnoses continues to grow. But I’d rather know everything that’s going wrong in my body so that I can be informed about how to heal. I don’t care how grim the news is, bring it on. Just let me find out the truth so that I know my health enemy when I see it. The next step is to bring my kiddos to the Lyme clinic, to see if we can find out more information about what is happening in their little bodies. Every symptom that they have can potentially be caused by congenital Lyme. Or it may be that they just have true Tourette Syndrome, with all of its fun comorbid conditions. Or they may have issues with strep, or neurotransmitter imbalances…I don’t know yet. But we’re going to find out.
I just want you to make sure you listen to your heart. Don’t be afraid to keep looking for answers, in whatever you’re searching for. Who cares if you piss people off or they find you annoying, or accuse you of insanity? Ultimately, you have to listen to your own soul, and know that you have the right to health and happiness. Sometimes you don’t find answers as easily as you want, or in the places that you expect. But just keep searching. You’ll find what you’re looking for.

Wednesday, January 18, 2017

Miracles Do Happen

My son is proof that miracles happen. My 14-year-old son recently got home from a 3-day trip with our church youth group to a water park 3 hours away from home. MY son. There are no words to describe how I felt as I ferociously hugged my boy to my heart before I sent him on his 3-day-away-from-Mama trip. I was so proud of him for wanting to go. I was worried I’d have to trek and fetch him early because he wouldn’t be able to handle it. I was nervous he wouldn’t take his meds. I was hoping he wouldn’t have a panic attack. I was so happy that he wanted to go on this trip, that he even wanted to try to go without me or Dad. I was so proud of my son.

Remember my son? The one who was born three months too soon, clinging to the cusp of life with the help of a ventilator. My tiniest baby- the one who squeaked in at just over 2lbs. My toddler who absolutely melted into a puddle of fear if a stranger even looked at him while we were out and about. Truly, if a stranger looked at him, he couldn’t function. He would cling to me as if his life depended on it, and usually burst into tears of terror. And if that stranger dared to mutter a “hello” to my adorable little boy, forget it. It would take me hours to help him recover.

My little third grader, who would wake in a panic at 3am most days, convinced he would miss the school bus that was due to arrive 4 ½ hours later. He would gather his belongings, wrap his coat over his tiny body, and have a meltdown that would last for hours. Until the school bus came, to be precise.

My son, who could not sleep. He couldn’t sleep at any age. Not as an infant, not as a toddler, not as a 9-year-old. Not until the psychiatrist gave us medicine to help him sleep. When parents contact me in desperation because their littles won’t sleep and they have heard that weighted blankets could help, I get it. I know the deep exhaustion that settles in your bones after years and years of no sleep, or at best, interrupted sleep. I remember my boy having panic attacks year after year when it was bedtime. No matter what we did. People said to let him cry it out. Let him scream. Leave him alone. The “Super Nanny” suggested putting him to bed without a word every single time he came out of his room. Over. And Over. And Over. And Over. To no avail. Doctors even suggested locking his bedroom door from the outside so he couldn’t get out when he was supposed to stay in. Yeah, THAT’S a great idea for a kid with an anxiety disorder! (not) We tried every single thing that anyone could possibly think of to get our boy to sleep. And noth. ing. worked. Until we had a prescription in hand that brings sleep to our son’s brain. It turns life off for a few hours so he can rest.

My son, who had so many panic attacks in middle school. He would cry at night because he was worried I would die, because every single novel they read in 6th grade English had a story line that revolved around a mother dying. Was there any compassion from the teacher? Nope. We got, “He’s got to learn to cope with these things.” Nice. We struggled through. My boy kept getting up and facing the impossibly hard days, one day at a time, until he got to this year.

Something has happened to him this year. He’s got it. He just ‘gets’ life. He understands how it’s all supposed to work. The change to high school has been an absolute success for him. He feels encouraged, supported, and valued there. He has more opportunities to be involved than you can imagine. He loves being busy, social, and making a difference. He has found an outlet not only through school, but also through our church. He has had the opportunity to be involved in service projects that impact our community. He has been able to have fun and grow as a spiritual being.

My 14-year-old just spent three nights away from me, sleeping not enough, but relatively fine. He did text me at 3:36 am one night (as I was up with his sister anyway, because none of our children can sleep), saying he was having a bad panic attack. But he texted back a few minutes later, saying that he was feeling better. Turns out, he accidentally took his nighttime meds in the morning, so he never got his morning anti-anxiety med. Hence the panic attack. But can you believe it? Three nights, away from home, without a parent, and he’s fine. Totally fine. (Although he did sleep for 17 hours straight when he got home. Did he sleep at all while he was away?? I guess that’s living, baby. Sometimes when you're young, life is too exciting and fun to waste time sleeping.)

When I was in high school, I had the opportunity to go on some incredible trips with my church youth group. I saw and experienced things I never would have had access to without that group. Those experiences changed the way I see things. I was able to help people, reach out to people, and grow into who I was meant to be. I was able to be away from home, but still in a safe, supported setting. I was able to be with friends. I love watching my boy be able to do the exact same thing.

I realize that although I want to keep him safe and home with me forever, I can’t tether my boy's wings. He has to use this time of his life to explore, grow, branch out. He has to have more independence so that he can become who he is meant to be. I love having a front row seat to watch my babies grow up. It’s the best gift ever. There are no words to describe how I felt as I hugged my boy SO tightly to my heart when I picked him from his 3-day-away-from-Mama trip. I was worried he would be exhausted and rage-y. I was nervous he’d have trouble fitting back into normal, boring family life. I was so proud of him for going on this trip that I could feel the pride bubbling from every cell of my body. My boy. He’s come so far. Who knew we’d ever get to this point? There are still challenges we face every day, but look at how far he’s come. He’s got this life thing under control. As a parent, there is nothing better than to walk with your child as they continue to grow into the beautiful person you always knew they were.

Wednesday, December 7, 2016

The Couch of Life

Sometimes, practicing gratitude is very similar to digging for change in your couch. No matter how hard you dig, you just can’t find it. You have a million blessings staring you in the face. Common sense, obvious things. Things like your cozy warm house on this cold, snowy night. Things like your four kiddos, all tucked under their blankets, sleeping like angels. Things like a fridge with food in it. Things like friends and family to support you. This is your Couch of Life. You can see it, feel it, it’s right in front of you and you know you should feel gratitude just because it’s there. But sometimes you just can’t find that elusive change that’s elbow-deep in the couch cushions. Sometimes you just can’t find the gratitude you know you should feel.

Gratitude—its presence staring you in the face. And you wonder why you just don’t feel it.

Sometimes, friends, the couch is not enough. It’s not enough to sit on it and feel its comfy divets from the years of love and wear. Sometimes, although your brain knows you’re grateful for the couch, your heart feels something is missing. Sometimes, you have to scrounge under the couch cushions to find change, or a nugget of gratitude. Once in a while, gratitude is so scarce that you have to dig your fist into the side of the Couch of Life, sliding it under the cushion, twisting your fist to maneuver around the crumbs that your four darlings have smashed and past the Lego pieces that haven’t been eaten by the dogs, and dare to stick the tips of your fingers into that crack in the back of the couch that no one ever touches (because really, who knows what moist, slimy, long-forgotten-kid-thing lurks in there??). All in the name of trying to feel the gratitude. Your brain knows it’s there. Your heart seems to have forgotten. 

Which makes you feel incredibly guilty, because you see your blessings right in front of you and your brain knows your heart should feel grateful. But sometimes ‘knowing’ is not the same as ‘feeling.’
I’m having trouble finding gratitude. No matter how hard I dig, how hopeful I feel about finding a nugget of thankfulness, I can’t find any gratitude in those good ol’ couch cushions of my life. Looking at the bigger picture, I understand where my heart is coming from. But it doesn’t make me feel less guilty that I am not more grateful and happy.

In the past six months, we’ve had our life blown apart in a zillion directions. We’ve had a few major appliances break down. The van has broken down multiple times, and we have to take it in again because something is making a God-awful squeaky wail that can't be good. Kids have been sick. Alex has been sick. Doctors have been idiots. (When I say “idiots,” I just mean total dummies. It’s astounding to me how some people in this world choose to be safe and status quo rather than awesome, ground-breaking, and courageous. I’ve decided to find doctors who live up to my standards.) I’ve found out more interesting craziness about my health. Some of our extended family members have had major health issues. Alex found out he will be laid off in March because his company is outsourcing. A couple of our kids’ support team members have moved on to beautiful opportunities where they will continue to make the world a better place. (I’m so happy for our friends. I’m just sad for us, because these special people have made quite an enormous, positive impact on our lives. We’ll miss them, even as we wish them all the best in their new opportunities.) Some of our kiddos continue to struggle at school. Alex had foot surgery and was off his feet for 6 weeks. Unable to drive. Unable to do much of anything except warm up the recliner, poor guy. So “Uber Mom,” as one friend termed me, chauffeured four little darlings to all of their activities, and one big hunky darling to all of his doctor appointments, and the occasional outing to the office. Oof. That’s a lot of miles for Uber Mom. That’s a lot of everything for Uber Mom. Because this isn’t enough stress for one Mama, THEN our shower started leaking. Into the ceiling of the floor below, into the walls, down to the basement. Great. Mold, anyone? Obviously, mold is unhealthy for anyone. But when you have mold toxicity, aka Chronic Inflammatory Response Syndrome, mold is a death sentence. Or at least a “you’re going to feel really horrible and really really ill” sentence. So we’ve been scrambling to get this fixed. But because of ‘life’ and insurance agents who are slow, the repair took weeks to begin. It got underway today. But on Thanksgiving, we found that our OTHER upstairs bathroom is leaking too. *sigh* And then Aidan got sick in the middle of Thanksgiving dinner and had to come home from Grandpa and Grandma’s house because he felt like he was going to throw up or have diarrhea all over their house. *more sighs* I almost got to finish my turkey dinner. Not to mention the HUGE allergic reaction I had to something I ate at a restaurant a couple weeks ago- probably the fish. Scary.

So I’m having a little trouble finding the nuggets of gratitude, or the coins of change in the couch, as it were. I still feel pretty rotten, which is annoying since I’ve been in treatment for mold toxicity for two years now. I started searching for other missing pieces of my health. I’m trying to find out why I still feel like garbage even after all this treatment.

During my search, I’ve stumbled upon a new doctor. He is an osteopath. He is holistic, and looks at the whole picture of the patient- not just the symptoms that make you feel miserable, AND he takes our insurance. I literally cried when I found out about the insurance. Do you KNOW how many times I’ve felt like my only choice, in order to survive, was to take my crazy body and my kiddos’ crazy bodies to doctors who don’t take insurance??? This new doctor has given me hope that we can find out what else is going on in The Mystery Of The Body That Feels Like Crap. He has many ideas of what’s going on in my body as well as what to do about it to make me feel better. AND he’s not just throwing drugs at me and telling me it’s stress from my kids.

My new doctor has other doctors in his practice who complement his methods of care. I’m seeing one who is an expert in pain relief. He uses special manual therapy, and lasers, and all kinds of cool things, to really dig into the tissues of your body and realign everything and make it work more efficiently and less painfully. The first time I went to the doctor for a pain relief session, I laid on this mat. It’s called a Pulsed Electromagnetic Field mat (PEMF). You just lie there. The mat does whatever magnetic mats do. I could feel my energy shifting, but there weren’t any other physical signs that anything was happening. When I got up off that beautiful, amazing, glorious, non-descript mat, I felt as though the pain had MELTED right off my shoulders. I could. not. believe. it. I have not ever in years and years felt anything like the relief after I got off that mat. I cried all the way home. With gratitude. And relief. And I was just dumbfounded that that is what it feels like to have pain at about a 2 on the pain scale instead of an 11. Just think- that’s what people are supposed to feel like. Incredible.

I’ve been seeing my most favorite person on Earth- the pain doc- for three weeks now. It’s slow going. There’s a lot to deal with and unravel. I told him that I feel like he un-crunches me. I feel so crunched up from my pain in all my muscles that sometimes I forget to breathe. He said it’s like a cage, when you have chronic pain. Yes! That’s what it is! It’s my Pain Cage. My pain doc said that the goal is to let my brain out of the cage more and more often, so that soon it will learn that we don’t have to stay in the Pain Cage. We can live outside of it. What a miracle that would be.

Last week when I saw my pain doc, he pushed on this spot on my right shoulder and I burst into tears. We talked about what was going on, and he said that we hold emotions in our cells. I’ve read that we even hold memories in our cells. When he pushed on my shoulder, it was a trigger point and there is a lot of emotion held there that oozed out when he worked on it. In the form of me being a blubbering idiot. I’m lying face-down on a massage table, nose running, tears dripping, can’t breathe…so dignified. The best part was the doctor’s reaction. He kept saying, “That’s good. Let it out because otherwise this emotion is trapped in your body. We need you to cry more. Let the emotions out more.” Did I mention he is my most favorite person on Earth? He also said this trigger spot on the body corresponds with “burden.” In other words, I feel a heavy burden is on my shoulders. Uh, ya think? The last time I had a Reiki session with my teacher, we were talking about my neck, shoulder, and back pain, and I told her it feels like the weight of the world is on my shoulders. My new doc validated that.

So I’m supposed to do more crying. Like big cries. Not just the frequent tearing up that I always do lately. I’m working on it. It’s actually harder than you might think. The other very weird thing that happened twice last week is that I felt flashes of this strange emotion called “happiness.” Twice. Which felt so foreign to me that I realized how I am functionally depressed and anxious. I’m diagnosing myself as functionally depressed and anxious because I would bet that if you asked any of the people in my life, no one would say I’m depressed or suffer from anxiety. I’m functioning just fine. Or at least that’s how it looks on the outside. That’s how I HOPE it looks on the outside. When I was lying face down in my own tear pool on the massage table last week, I told my pain doc that it’s actually difficult for me to be honest with him about how completely horrible I feel. Because I’m used to just making the choice to get up and live the day the best I can and not give in to how crappy I feel all. The. Time. I’m used to trying to ignore my pain and just pretend the best I can that I’m happy and fine. The sad thing is that when people do find out how I really feel, they usually can’t believe it, because I’m really good at pretending to be fine. Fine is so over rated, isn’t it?
How are you today? Fine.
How was your day? Fine.
How are you feeling? Fine.
How was school? Fine.
How was your meeting? Fine.
How was dinner? Fine.
Everything is fine. Because if you told people how everything really was, most of them would run and hide and never speak to you again. Because you’re such a downer. And the others would put their arms around you and make you cry with their kindness. So it’s a no-win situation. Better to just claim that everything is fine.

Here’s the big secret. No one is fine. At least not all the time. Everyone is fighting some battle that you may not know about. Everyone has moments (or weeks, or even years) where they’re desperately throwing the proverbial couch cushions across the room, elbow-deep in the crumby aftermath of children’s snacks, searching for any small nugget of gratitude they can find deep in that Couch of Life. Me- I’m stuck in the Mediocrity of “Meh.” I just feel very beige about everything. Everything is “meh.” I hate beige. I hate “meh.” I adore being exuberant. Exuberance should be my middle name. Not “meh.” I figured I was just momentarily in The Land of Meh, and that I would be taking an exit soon and get the heck out of there. But sadly, my stay has been prolonged and no matter how hopeful I am that I will soon find change in the couch cushions, it hasn’t happened yet.

BUT, being the ever-optimist that I am, I WAS able to find some teensy tinsey moments of gratitude these last couple days. First of all, I’m grateful I felt flashes of happy twice last week. Because it made me see how not-normal-me I am.
Second. On Thanksgiving, Ella was sitting next to me at dinner. I turned to talk to her, and she interrupted me with an audible gasp. Oh, this girl. She exclaimed in hushed awe, “I LOVE your eye makeup.” (You know that emoji with the big huge eyes and tiny little circle mouth? I’m sure my boys know the name of it, but whatever, you know what I mean. Picture that here.) That girl brings a smile to my heart. Later that night when I put her to bed, I was reading to her while she slipped into sleep. All of a sudden, she interrupted me and said sleepily, “Mama, you have the voice of an angel.” Ok, come on!! Who wouldn’t kill to have a kid like this??? I’m so lucky to be the Mama to these four kids.

Here's more of what I’m grateful for. On the way home from Grandpa’s house on Thanksgiving, with my sick Aidan in the back seat, about to turn 11 in a couple days, he said softly, “I love you Mom. Thanks for always taking care of me.” Alright, seriously. I have the sweetest kids, right? When he missed his best friend and crawled into my lap during his birthday dinner at a restaurant, teary, he said, “I know you know how I feel because you miss YOUR best friend a lot too because she doesn’t live here either.” My little boy put his arms around my neck and we sat with our sadness together. Sometimes that’s all you can do- sit with someone in their sadness. And hold them tight. I love being there to hold my babies tight.

I’m grateful that Ben is kicking life’s butt these days. He seems to be getting the hang of turning off the Rage and turning in to his beautiful soul. Who is this kid? He has social events, he’s involved in things at church and school and with friends, he’s always on the go, he volunteers for all kinds of things, he’s got the hang of keeping up with homework, he SHOWERS…well, when we have showers that work and don’t leak. We took two cars to Grandpa’s house on Thanksgiving. When I pulled up with Aidan and Ella, Ben was already at Grandpa’s house. Ben opened the door for us. He looked incredible. He was dressed up all fancy in fancy grown up Thanksgiving clothes. He was happy, calm, beautiful, just happy. All a Mama wants in life is for her babies to be happy. After all the years of so many torturous challenges of all kinds, Ben seems to be finding his way in life so well.

Jonah. I’m grateful for so many things about Jonah. Every Thanksgiving, Ben and Jonah write a speech for Grandpa to give at dinner. The rule is the boys write the speech before dinner and Grandpa cannot read it until we’re all seated around the table about to eat turkey. The boys get a kick out of seeing Grandpa tear up when he reads all the sentimental things the boys have written. Things about the past year- how we’re grateful for everyone’s good health. How we love each other. How we’ve made so many fun memories this past year. Things that make sweet Grandpas cry. Jonah had to read Grandpa’s speech this year so that Grandpa could just listen and take it all in and not worry about getting a little weepy.

I’m thankful that Jonah is showing up at school every single day, pulling out his light saber of courage every morning and slaying Anxiety the best he can at every turn. I’m SO thankful Ben and Jonah go to the school they do. Get this—every single time I let the school know about a little bump in the road, or concern we have about the boys, I am consistently met with respectful action and compassion. Every single time. No matter what is going on. This school amazes and astounds me. It’s such a foreign concept and feeling, to be validated and supported. I love it. I love every single person who touches my boys’ lives there.

I have a lot to be grateful for. I am grateful for all of it. It’s just that life is pretty overwhelming and stressful right now, and honestly it’s depressing and anxiety-producing in many ways. Given everything that’s going on, it’s no wonder I feel functionally depressed, anxious, and meh. BUT, being the ever-optimist that I am, I have total faith. I have total faith that we will get through all of this crud and life will be fine someday and we’ll have more beautiful moments, and more stressful moments. In the meantime, I keep getting up every morning and doing what I have to do. I’ll keep looking for the tiny nuggets of gratitude that are buried deep in the cushions of my Couch of Life. I know they’re there, and I’m hopeful that it will become easier to poke around the crumbs and find the beautiful moments of gratitude.